I am so new at this. I've been taking care of my dad for three months now, just about 24/7. I do have help. I work part time from home. I've been reading topics on the forums here since before I joined. I see that there are a lot of feelings family caregivers have from one end of the spectrum to the other. I've been trying to do all the positive reinforcements to help burn out. I have a wonderful husband and family to help, but one thing I can't control: The feeling every morning... Is today the day my dad will be at rest?

Every morning I wake up with a knot in my stomach. If I don't hear his TV on or any noise from his room by 7am I'm a wreck. I find myself checking in on him just about every hour, just to make sure he's still breathing. I feel so awful feeling this way. I can't seem to concentrate until I know he's awake and ready to get dressed for the day. I hate planing for future events because I don't know what each day will be. He has CHF and some other health issues. Most of the time is is well, just can not be left alone.

So, how do family caregivers get over this every morning dread feeling???

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Dear "CindyLo,"

I'm so sorry you are struggling with those feelings of dread every morning - it's anxiety (and maybe some anticipatory grief mixed in) and that is something very hard to control. I would get anxious whenever the phone would ring wondering is this "the call" about my mom.

I experienced it when I was looking after my mom from a short distance. I would constantly call to see if she was ok and even bought a life alert system for her to use. I had the same fear and anxiety that you did. It was really hard because I knew she had a pool and wasn't a swimmer. She had refused to have a pool fence built and I was so afraid she would lose her balance, fall in and drown (my elderly childhood blind dog did that so the fear was really ingrained in me). So I understand your feelings.

You are doing everything else right, you have a wonderful husband and family to help you out but, your consumed with fear of the unknown and uncertainty. We all go through this or similar things when caring for someone whom we love and whom we don't or aren't ready to let go of.

I think you have to try and prepare yourself for what is inevitable - that one day your dad will leave this earth. Then you'll need to find ways to deal with the anxiety and fear. There are a lot of articles regarding those issues. I myself have had to resort to medication for the anxiety as it eventually created major health issues for me.

We simply don't want to lose our loved ones - that's what you need to work with otherwise, you will keep waking up everyday and go through the same issues. It really is no way to live. What does your husband suggest in those moments?

God is in control, He is not taken by surprise with anything that happens in our daily life and He has numbered our days - we can't exceed them. When it's our time, it is our time. Hold on firmly to Him and He will help you through this.

You will be in my thoughts and prayers as you try to face each day - take care of yourself, dad and family to the best of your ability - that's all you can really do.
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Reply to NobodyGetsIt

I'm not sure you ever get over that feeling of dread, but thankfully, you can get through it. My husband was under Hospice care in our home for 22 months and during that time I was told 4 times that they thought the end was near. My husband spent the last 22 months of his life in a hospital bed in our living room. Each morning when I would go in our living room, the very first thing I did (for 22 months), was look at my husbands chest to see if he was still breathing. Sometimes I would get up over night to check as well. It's very hard to wonder every day, if today will be the day.
You really just have to turn it over to God, and know that He has everything under control, and when it's your fathers time to go, it will be his time to go. I know that is much easier said than done, but if you can do that, you will find that you'll have a peace that surpasses all understanding.
So please just take one day at a time, and make the most of whatever time you have left with your father. God bless you and your family.
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Reply to funkygrandma59

Hello. My mom is 91 years old and is in a nursing home with physical issues and dementia. It breaks my heart knowing that this is where she is spending the rest of her days instead of being the vibrant woman she once was living in her own space. Although she seems to be in relatively good health, I am still aware of her age and a heart condition she has had. Every day she enters my mind at some point and I am SO aware of her eventual death. All funeral arrangements have been made and paid in full. It is now just time to wait. I got myself into the frame of mind that I can only take One Day At A Time and I Have No Control Over When She Will Pass. I give myself the time to relax my thoughts by being active in the things that interest me. When the caller ID shows it is the nursing home calling, I feel as if I am as prepared as I can be if it is the final call. Take one day at a time, appreciate the time you have with your father. Talk to someone about your feelings, you will find many people have gone through the same thing. You will be okay. You can't control the circumstances but Trust Me. You are Stronger than you think. Be well.
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Reply to Caregiver1954
NobodyGetsIt Oct 7, 2020
Dear "Caregiver1954,"

I certainly understand your heartbreak seeing a once vibrant woman who lived in her own space now living in a NH with physical issues and dementia. I too feel as you do about my mom who will soon be 96 with Alzheimer's. It's been especially hard since she was completely mobile and able to dress herself until this past April when she nearly died at her ALF from severe dehydration, COVID and a couple of other things. She survived for which I'm extremely grateful but, she can no longer walk or dress herself, isn't eating much and it's so hard to see her in that condition.

I commend you for everything you have done to prepare for that day, the funeral arrangements have been made and paid for and you "got yourself" (which means you've made a conscious choice) into the frame of mind of taking one day at a time and realizing you have no control over when she will pass. You have accomplished a lot!

Continue to do those things - yes, you will still grieve when that time finally comes but, I believe you've been given the strength to endure!

Take care - and I'm glad you are there for your mom and I'm sure you are a comfort to her during her last stage of life.
What you're experiencing is a normal feeling in anticipation of a LOs death. Although we think of grief as something we experience after someone's death,"anticipatory grief" is the sadness we feel in anticipation of a LOs death. There's no "getting over it" so don't be afraid to express your emotions. Cry, be frustrated, dread tomorrow it's all OK. Be honest about your feelings. But you can choose to minimize your grief.

Some anxiety may come from not being prepared for his death. Are there any unresolved issues between you two? Have you made plans for his burial? Do you know his final wishes? Spend time with him.

See if there's an dementia support group in your area, learn more about his illnesses by researching on the web, find books at your library, discuss your concerns and feeling with your church leader, seek professional help from a councelor, talk to your dr about your anxiety, You can also research "grief" what it is and how to minimize it. Waking up every day and dreading the day ahead can lead to some physical issues of your own. Choose to address your grief by talking to others and educating yourself. You can help yourself. Good luck.
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Reply to sjplegacy

I live with my 84 year old Dad. My mother died 2 years ago at home with my Dad and I by her side. And now I am going through the same thing you are. I think it's normal, just part of how we handle the knowledge that our parents aren't going to live forever. Some days I handle better than others. I had to have a talk with myself because I wasn't getting any rest which seemed to make me even crazier. My Dad wants to die at home if at all possible, so if I wake up one morning and he is dead, then it's ok. However, if I wake up with the need to check on him, I come on downstairs, look at him in his bedroom to see if he's breathing and then I go back up stairs and attempt to go back to sleep. It would make him sad if he knew I was getting up a lot, so I try not to fret. My main focus is to enjoy the time I have with my Dad (lots of westerns on the weekends, Jeopardy during the week and news when he wants to watch it), do my best to take care of myself and acknowledge that one day he will die. I know that it will hurt, I will cry, and it will be hard. But eventually, I will be ok even when there are days that I will feel like I'm drowning. I send you a very big hug and hope it helps you to know that there are so many of us doing the same thing you are.
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Reply to Dawnelyn
NobodyGetsIt Oct 10, 2020
Dear "Dawnelyn,"

A big hug to you - you are handling everything so well and to the best of your ability along with your focus being to enjoy this time with your dad.

You are as prepared as you can be for when that time comes and your dad is lucky to have you by his side and your mom was lucky too.

God bless you and give you strength as you face each day with your dad.
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NobodyGetsIt has given insightful and compassionate advice and suggestions.    These are hard times for caregivers, and it's challenging to find coping ways.

A good friend who lost parents to cancer told me that he reminded himself while caring for his parents that he was doing the best thing he could for them, by supporting them, being with them, consoling them, and making the challenging and upsetting decisions at the end.    That was advice I took and reminded myself of it constantly.

Toward the end, his qualify of life was nil, it was so challenging to see him that way, and my approach turned from prolonging his life to seeing him relieved of his discomfort and pain.   I felt the same way when my sister died of metastatic breast cancer.   Her agony was palpable, she couldn't talk, eat, let alone stand or walk.   Her death provided her relief from that living h*ll.

But I also indulged in future planning, of what I would do with my life after my father was gone.   It helped create perspective, and a reminder that life is impermanent, and we need to capture the best of it while we can to help us in the next phase of our life.   Knowing that you're providing excellent care for your father, and take pride in that, even though the anxiety is always there.
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Reply to GardenArtist
NobodyGetsIt Oct 7, 2020

Thank you for the kind words. I think your good friend found something helpful to help him through caring for his parents - that he was doing the best he was capable of for them, being supportive to them, spending time with them, comforting them and making those important and upsetting decisions at the end. I'm glad you have taken his advice and it does help.
I also have done those things and it especially has been helpful to say those things "out loud" if you will. I have also found that finding "one" thing even if it's small to be grateful for i.e. my mom isn't eating much let alone full meals so when I went to do a window visit yesterday, I was grateful she was eating a small dish of peaches. It may sound silly but, it really helps with your own attitude - similar to looking for a silver lining if it's even only a "sliver."

Also, I think the future planning is a very good idea instead of waiting until when that moment finally has come and your overwhelmed and in the midst of the grief.

I myself am getting ready to fill out the paperwork the mortuary has sent me, I have her burial outfit ready along with all the accessories and have sketched out a memorial folder as well as the obituary. This will alleviate some of the stress as well as the part where you don't or can't always think clearly when the actual moment arrives.

Journaling is still helpful which I did when my father was dying and I bought a pretty journal book for it and now it's a memory that I will never forget because surely by now after 16 years have passed, I will unfortunately have forgotten some of those special moments.

It really takes a strong, mature attitude such as your friend had to take the focus off of ourselves and focus on watching our loved one being relieved of the discomfort, pain and suffering. My daily prayer is for God to show His mercy and grace for my mom and our family.
Concentrate on the positive. None of us know how long we have on earth. My grandfather died at 81, my grandmother almost made it to 99, her brother died in his teens of heart failure... So welcome the day and make the most of it. You want to create good memories for yourself, your family and fun for your dad while you share life together.
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Reply to Taarna

I am at an age were I have witnessed the passing of elderly family members.. Some were lingering for a long time, one with major memory issues .The common thread was they were ready to go .They were looking to be released. They were looking to release the family from the stress of caring for them. With my moms passing ( bone cancer) , yes, I would check on her and yes, there was dread. But, there was also the knowledge that she was ready . She had no quality of life and she knew the amount of stress the family was under. During the last month she was semi comatose and there was no chance of reversal of what was going on . Hospice suggested we all give her permission to go “home”. It was shortly after that, that she passed. I was with her . There was a slight cough and her hand rose slightly and she was gone. She lived her life the way she wanted to. She married and raised a family. Her children were all successful. She worked at a job she loved . She loved the grand kids and traveled some. There are memories. Lots of funny ones and a fair number of not so funny ones. When she was diagnosed with terminal cancer, we asked if there was something she wanted to do that she never got a chance to and her answer was, no. She worried about us as much as we worried about her. It was the completion of the circle of life. She was where she was suppose to be and there was no pain.
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Reply to Nanulinda1
Marykk Oct 10, 2020
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I'm sorry for your situation. It's a terrible way to have to live. I feel very similar. I can't provide any easy answers. Is your father on hospice? My LO has been for 2 years and I have been told by doctors on multiple occasions that she is not well and doesn't have long, but, she hangs in there. The hospice social worker has helped me a lot. She explained that some of what we feel is actually anticipatory grief. Since, I have a head start on grief, I hope I won't grieve so long after she does pass away. Most of the time it seems like it's surreal to me. It's something that's difficult to imagine, unless you live it.

I hope you can find some support and maybe some ways to lift your mood. Music, little home projects, talking with friends, etc. helps me a lot.
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Reply to Sunnygirl1

You just forge ahead and start the day.
I bet every new mom feels the same way when her baby first sleeps a bit late.
Is he on a routine schedule?
Wake at 7 am, shower, dress and breakfast? If not it might be a good idea to get a routine going that works for both of you. But if you don't want to do that there is no harm in checking in on him at 7 if he is awake you can ask if he wants breakfast, if he is still asleep check in again in an hour.
Because this is me I have to ask...Is your dad on Hospice?
Hospice can hep you through a lot of these questions and you will get supplies and equipment that you will need. You will also have a Nurse that will visit weekly, a CNA that will come in a few times a week to help bathe, change bed sheets, order supplies (if you want that type of help) Best of all you will get emotional support and education. (this is all covered by Medicare so no extra cost to you for all the services you will get)All it takes is a phone call to determine if he is eligible.
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Reply to Grandma1954
NobodyGetsIt Oct 10, 2020

I had hospice for my dad in 2004 and now have hospice for my mom at her facility in memory care.

I will always be eternally grateful to them for everything they do and provide!
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